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Barth Syndrome Emergency Relief Fund

Barth Syndrome Emergency Relief Program

Barth Syndrome Emergency Relief Program

BSF recognizes the tremendous financial burden that a hospital stay or passing of a loved one with Barth syndrome places on families. These life-altering moments often mean time away from work while simultaneously encountering expenses difficult to absorb into household budgets. When families are confronting some of the most emotionally challenging moments of their lives, finances should be the last of their worries.  

For this reason, BSF has funded the Barth Syndrome Emergency Relief Program through the National Organization for Rare Disorders (NORD). In 2022, BSF established the fund through NORD to support approximately 20 families in the inaugural year of the program. Families who meet the eligibility criteria can apply for short-term assistance to cover the cost of unexpected or emergency non-medical expenses.  

BSF recognizes that asking for help is sometimes hard to do. Partnering with NORD protects families’ privacy and allows families to seek assistance with dignity and support offered by their specialized team of patient service representatives.  

You can learn more about whether you or your family may qualify for the Barth Syndrome Emergency Relief Program by clicking here. You can also call a NORD Patient Services Representative at 1.203.292.0293 (Monday – Thursday 8:30am – 7pm ET or Friday 830am – 6pm ET) or email NORD at barthsyndrome_assist@rarediseases.org

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